11:03am March 1, 2012

➸ Kaz's tumblings: youneedacat: “But anyway, we have seen a few discussions going around...

“But anyway, we have seen a few discussions going around lately about how non-autistic professionals tend to say autism is about impaired socialization, “theory of mind,” stereotyped repetitive behaviors, etc. While autistic people say that it’s about profound differences in…

Yeah the way I’ve often described the DSM criteria is “the stuff that bothers doctors”. And of course other nonautistic people. Not that it never bothers autistic people, but it almost always is what bothers people on the outside whereas it’s less likely to be the main concerns of people on the inside.

What you said just gave me a new thought though: What if which sensory issues get stressed still follows along the same lines? As in, I am constantly frustrated by the fact that the only sensory issues most people seem to discuss are specific hypersensitivities, sometimes general hypersensitivity, and more rarely specific or general hyposensitivity. After all, it was still nonautistic people who first published such things. Probably as a theory to explain things like meltdowns, stimming, and failure to react to people. (Which isn’t always a true reaction to hyposensitivity, but that’s what nonautistic theories of autism look like.)

The reason it frustrates me is that the ways that my sensory processing gives me the most trouble aren’t because of those things. (Or even misophonia, which isn’t really the same thing but gets lumped in by a lot of people.) And I can’t be alone, but still they’re all most people ever talk about.

What does give me trouble are things like:

Trouble telling where one thing stops and another starts
Perceiving things in disconnected pieces
Being unable to interpret sensory information
Being only able to perceive one sense or fewer at a time
Bleedover from one sense into others (unlike traditional synesthesia, this is dependent on a lot of contextual stuff about how my brain is working at the time, and is different every time)
Getting random “noise” on any given sensory channel, to the point it can overshadow actual perception
Being so wrapped up in sensory information that thinking isn’t possible
Uneven intensity of sensation
Having all or nearly all sensory information disappear
Sensory backlog. This results in temporarily losing most or all sensory information. Then when I get a chance to lie down, everything replays exactly as if I am experiencing it for real. I can’t even think while this is going on. Then when it’s over, I almost always find that I’ve been lying in one exact position and have drooled everywhere.
Jumbled perceptions.
Sensory distortions. Usually worse the more intense the sensation.
Perceiving things most people don’t but that are definitely there (as in, not hallucinations, but more detail or different frequency or not shutting unexpected or unwanted information out)
Perceiving my own body as just as external as anything else
Trouble localizing body sensations
Frequent overload and shutdown, not the same as finding a specific sensation heightened or unpleasant
Perceiving the world as mostly sensory instead of mostly thoughts
Frequent or constant fluctuations in sensory perception

That’s just what I could come up with quickly. It’s not all that’s there. And very few people even talk about this stuff. Often I get confused looks for bringing it up but there’s always a few people who experience a lot of these things.

My experience of autism is that it’s primarily about sensory perception, thinking, and movement, and the connections between those things. The boundaries between them are blurry because they are words, and it’s sort of like deciding precisely where to distinguish one color from another. Only more complicated.

I actually experience plenty of social problems. But to me, those things are just not central to what autism actually is. If I really felt like it, I could write about my experiences of autism in a way that put those things in the middle. But I don’t. And people mistake this for claiming they are not there at all.

Where I differ from conventional views of autism most is what I attribute my social problems to. They are either outgrowths of differences in perception, movement, and thinking. (And not because of a defective “social module” in my thinking either.) Or else they are products of the clash between my thoughts, perceptions, and movements, and those of someone very different from me. There’s also the fact that my social strengths are unusual in themselves and therefore autism researchers wouldn’t even know where to look to find them. And I can read perfectly people very like me. Among autistic people, the more someone has in common with me the better we read and understand each other.

I also note that despite the fact that nonautistic people can’t understand any of us very well, they are never described as having severe social deficits for this. It makes no sense to me: We have trouble understanding them. So they say we have severe social deficits. They have trouble understanding us. So they say we have severe social deficits. Among many other deficits that amount to them not being able to readily see something therefore it not being there at all. Careful research is overturning a lot of these ideas but it’s hard to convince anyone of that.

True story, and one that happens repeatedly for me: I often bring people to meetings with me to interpret for me in both directions. These are people familiar enough to be able to read and predict me well, whether they’re autistic themselves or not. So a frequent problem is that my interpreter will watch me and tell the other person what I’m thinking and feeling. The other person will then say, “There is no way you could possibly know that – she doesn’t have any body language for you to read!” *headdesk*

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